Raising money to live with a rare disease now twice as important to Shoals couple

MUSCLE SHOALS, Ala. - A Muscle Shoals couple is sharing their little boy's story to raise awareness about a life threatening disease. But it recently became twice as important.

Kruz Davenport came into the world a little early and he had a rough start. He only weighed 3 pounds and 6 ounces when he was delivered by emergency cesarean section after his heart stopped beating. His mother Jessica says, “He’s a miracle to be here. He wasn't breathing when he came out. They did CPR on him. He got sent to the NICU in Huntsville for a month to grow.”.....click here to view the full report

"...That’s when the puzzle finally came together. Dr. Monica Cramer, pediatric nephrologist, reviewed Kruz’s case: short stature, nephrotic syndrome (needed protein is excreted through the kidneys, leading to kidney failure in five to 10 years), T cell deficiency (weakened immune system). Cramer ordered genetic testing to confirm what she suspected, and in June 2016, Kruz was diagnosed with Schimke immuno-osseius dysplasia.".....click here to view full report

Alabama siblings are 2 of 6 people in the U.S. fighting rare disease

"It's a parent's worst nightmare. This summer, a family in Muscle Shoals found out her son and daughter have the same rare disease.

It's so rare that there are only six confirmed cases in the U.S., which includes Kruz and Paizlee Davenport.

Kruz Davenport, 3, meets a Crimson Tide football player as he and his family work to spread awareness of his life-threatening genetic disorder, a rare form of dwarfism.

Kruz Davenport is a tiny 3-year-old with some big friends.

He calls them his "football friends" and met them a few weeks ago when he and his parents, Kyle and Jessica Davenport, traveled to Tuscaloosa to meet University of Alabama football coach Nick Saban and members of the Crimson Tide football team.

Kruz got to sit at Coach Saban's desk and play with Saban's glasses. He visited the workout room, where he craned his neck upward to see the huge football players as he handed them bottles of Gatorade and t-shirts emblazoned with the words "1-in-3 million."

Local toddler diagnosed with rare disorder

He greets everyone he meets with an enthusiastic "hey" and a big smile.

He likes chicken nuggets, dinosaurs and watching cartoons.

He's pretty fond of his little sister, Paizlee, and he shows that affection by tackling her with hugs.

He runs around the family's living run shouting, "I'm busy. I'm busy."

"That is one of the hardest parts," Jessica said, watching Kruz play like a typical toddler. "So much about his day is normal. I have days when I get out of bed and think, 'I've got this,' but there are others when I just want to turn my phone off and stay in bed."....